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And there's more to come

Updated: Dec 7, 2023



This has been the place where

I’ve shared so much about

the process I’ve been in,

discovering dementia in my life.

The process has been full of fear at first,

then energy, exhilaration, fascination.

Something’s opened up as I open up to life now. Writing, making the pieces for the coat of dementia, exploring, playing.


Hope this piece might speak to you.




There’s another tribe, a community of people in a similar place who I’ve met through the DEEP Network. I care so much for them, and feel connected with who they are. Thery’re fun and full of courage. I can bring my fear and my own courage, my own funny side. I think they’re who they’ve always been, as I am.

Something’s shifting. I’m moving between a Falls Prevention Programme and three creative groups, two for writing and one for textile art. There’s so much to learn, and unlearn.

The friends who are around are more and more central. The gifts of dementia are getting clearer. Some are new, some have been alongside for many years, now taking new forms.

Dementia is integrating itself with all the other things I am and I’ve been. I’m not fighting it, I’m finding ways to live with it, adapt, adjust. When I look at the bigger picture, there are so many chapters in life. They’ve all involved loss and risk and discovery, changes in identity and focus. Dementia is another to explore.

As of right now, dementia lives alongside. it’s not dominant or consuming. Dementia calls me into life. It calls me to reach out to others who are struggling, to bring the skills I still have to bring a little support, a little meaning, where it’s got lost in the pit of the dementia identity. Our culture’s view of dementia tries to pull us into a dark, tragic place where we’re only aware of the deficits, the disconnections, the vulnerability, the isolation. But I feel more confident, more hopeful. I don’t need to apologise or hide so much, because it doesn’t matter now. There are alternative ways to be, ways that can be expansive, creative, connecting, enhancing rather than diminishing, distressing and tragic.

Maybe we can bring an alternative understanding of dementia into more people’s perceptions. Possibilities narrow, but maybe we can dance, paint, sing, touch, write, to connect as the words in our mouths get more elusive. There’s so much joy. So much to share and explore.


Dementia is not the end of everything, it's another change. Life ends, and maybe we can choose to leave dying for when it comes. The knowledge of death can make us more alive. We don’t have to bring death into every second of the precious time we do have. We don’t have to sit in its waiting room until it arrives. There’s so much more.

I know this clarity will probably change as time goes on, and it’s certainly not all there is to understand and connect with. But I also think we need to learn to listen to the voices which offer different ways of approaching what can be a devastating situation. For me recently, it’s books like “Why dementia makes communication difficult” by Alison Wray which remind me that some people really understand. And it's people who experience life differently.

I don’t want to be managed. I want to be met, and I want to meet life, as it is.

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5 Comments


Thanks for this, Max. It's a joy to read it. Marilyn xxx

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Nell Nelson
Nell Nelson
Dec 06, 2023

Bravo!

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Chris
Chris
Dec 06, 2023

I am full of admiration for the way that you are creating and expressing so many positives from this change in your life Maxine. Your words are inspirational. THANK YOU X

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That is a beautiful piece of writing, Maxine, full of clarity and compassion. It is a beautiful picture accompanying the piece, too

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Yes Maxine!

what a refreshing way of expressing a different perspective of Dementia/Alzheimers

Less stigmatising and more positive

There are always positives amongst the negatives.

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